First, a big thank to Greg Procter (author of Faith, Strength, and courage) for coming up with the topics idea: Lack of Information. Many people fighting multiple myeloma throughout their journey feel they are all alone, or that there is a lack of education. Greg highlights this topic / feeling in his book. Clearly, gathering information about a really rare blood cancer is important -- but the current information is fragmented. We decided to build Patient Connect.
There are some helpful resources like the Facebook Multiple Myeloma Warrior Community, IMF, MMRF. These resources allow you to learn about financial resources for multiple myeloma warriors, treatment education, and more.
This fragmentation of information inspired us to build Patient Connect, a platform that helps multiple myeloma patients find one another, connect, and share their experiences. Our goal is to bridge the gap between patients and the information they need, providing a community where individuals can learn from one another and find the resources that can make their journey a little easier.
Resources for Financial Assistance and Education
For many patients, the financial burden of multiple myeloma treatment can feel overwhelming. Fortunately, there are organizations dedicated to easing this burden. The International Myeloma Foundation (IMF) and the Multiple Myeloma Research Foundation (MMRF) are excellent starting points for understanding the disease, exploring treatment options, and finding financial support. These organizations provide grants, connect patients to clinical trials, and offer a wealth of educational materials to empower patients.
The Multiple Myeloma Warrior Community on Facebook is another invaluable resource, offering a space where patients and caregivers can exchange advice, share stories, and provide mutual support. This tight-knit community ensures that no one feels alone in their journey.
Why Patient Connect?
While these resources are invaluable, they don’t always address the need for a direct, patient-to-patient connection. That’s where Patient Connect shines. Through our platform, users can find others navigating similar challenges—whether they’re newly diagnosed, undergoing CAR T-cell therapy, or managing long-term remission. Our mission is to empower patients with real-world knowledge, shared stories, and a network of support.
Patient Support Groups
Support groups can be a lifeline for multiple myeloma patients and their loved ones, providing emotional support, shared experiences, and practical advice. Many organizations offer dedicated support groups tailored to the unique needs of those navigating this journey.
IMF Support Groups for Myeloma Families offer a compassionate space for patients and their families to connect, share challenges, and find encouragement.
CancerCare’s Multiple Myeloma Patient Support Group is a professionally led online group providing education and emotional support to patients across the U.S.
HealthTree Multiple Myeloma Support Groups connect patients and caregivers with a vibrant community of people sharing their experiences and insights about living with multiple myeloma.
These groups are a reminder that no one has to face this journey alone. Explore these resources to find a group that fits your needs.
Our Vision for the Future
We envision a world where no patient feels isolated or uninformed. By partnering with organizations like specialty hospitals, support groups, and nonprofits, we aim to create a robust ecosystem of care for multiple myeloma patients. Already, we’ve connected with over 1,000 patients in our community and are building partnerships with institutions to expand access to support and care.
Together, we can transform the patient experience for those battling multiple myeloma. If you’re interested in joining the Patient Connect community or learning more about our mission, visit Patient Connect or follow us on LinkedIn and Twitter.
Conclusion
As Greg Procter so eloquently highlights in Faith, Strength, and Courage, information is power. Let’s ensure that every multiple myeloma warrior has access to the education, connections, and support they need to face this disease with confidence and hope.
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